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A qualitative study of online support communities for lung cancer survivors on targeted therapies
Casey A Walsh1,2, Morhaf Al Achkar3
1Department of Health Services, University of Washington, Seattle, WA, USA. cwalsh2@uw.edu.
Background:
Due to recent treatment advances, people who have non-small cell lung cancer with oncogenic alterations are an important new group of cancer survivors. Little is known about lung cancer online support communities. This research was guided by two primary questions: (1) How do these lung cancer survivors engage in online support communities? and (2) What are the psychological, social, and physical impacts of such engagement?
Methods:
Qualitative in-depth interviews were conducted with patients with advanced lung cancer (N = 40) to learn about their experiences with the illness. We used qualitative thematic analysis, inductive and deductive, as outlined by Carspecken. We adapted the framework for studying online communities developed by Zhang and colleagues to examine engagement with and impacts of involvement in online lung cancer support communities.
Results:
Participants described engaging in the online community through (1) initializing communication through asking questions or sharing resources, (2) responding to others comments or inquiries, or (3) simply observing/reading others posts. Participation had physical, psychological, or social impacts, with benefits (e.g., empowerment) and risks (e.g., feelings of jealousy or misinformation) in each domain. Participants used various strategies to mitigate negative impacts, such as distancing oneself as needed.
Conclusions:
Online lung cancer support communities provide support, camaraderie, and specialized health information. However, there are also risks of online engagement, such as social comparison or accessing misinformation. Understanding the utility of online support communities for lung cancer survivors on targeted therapies and further addressing their risks are urgent tasks, especially in the post-COVID era.
Insights
Online communities offer support and information for non-small cell lung cancer survivors, but also present risks like misinformation. Understanding engagement and mitigating negative impacts are crucial for these cancer survivors.
Area of Science:
- Oncology
- Digital Health
- Patient Support
Background:
- Growing population of non-small cell lung cancer (NSCLC) survivors due to targeted therapies.
- Limited understanding of online support community dynamics for NSCLC patients.
- Need to explore survivor engagement and its multifaceted impacts within these digital spaces.
Purpose of the Study:
- To investigate how advanced lung cancer survivors engage in online support communities.
- To identify the psychological, social, and physical impacts of this engagement.
- To understand strategies survivors use to navigate these online environments.
Main Methods:
- Qualitative in-depth interviews with 40 advanced lung cancer patients.
- Thematic analysis (inductive and deductive) of interview data.
- Adaptation of a framework for studying online community engagement and impact.
Main Results:
- Survivor engagement observed through initiating communication, responding to others, and passive observation.
- Participation yielded both benefits (e.g., empowerment) and risks (e.g., jealousy, misinformation) across physical, psychological, and social domains.
- Survivors employed strategies like self-distancing to manage negative online experiences.
Conclusions:
- Online communities provide valuable support, camaraderie, and health information for lung cancer survivors.
- Risks include social comparison and exposure to misinformation, necessitating careful navigation.
- Further research is vital to optimize the utility and safety of online support for NSCLC survivors, particularly in the post-COVID era.
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